What’s the point of Health 2.0?

…The remaining 95% of “patients” out there are not motivated to become informed, or invest the time/energy/money in using any of these tools. These are the folks that know that fast food isn’t healthy, but are just too tired to choose differently. Some (emphasis on some) will do a standard google search when they receive a new diagnosis at best. Yet these are the folks – often folks with multiple chronic (often preventable) health problems, many overweight, on multiple medications, sometimes social problems – that have the real issue that needs fixing.

So we can all sit and perfect the tools for a few folks that never needed them anyway, or we can recognize that the kinds of solutions required for healthcare in the US today have nothing to do with fancy IT, or prioritization on search engines, and everything to do with low-tech, unsexy approaches toward grass-roots public health. Sorry to be the voice of reality guys.

Someone going by the name Darthmed posted that comment yesterday and it stopped me in my tracks.

It is my job (literally) to measure the impact of the internet on society and contribute data to the public conversation. I analyze survey data, write reports, answer reporter’s questions, and speak at conferences where people either know too much about what I study or know so little that I come off as some kind of oracle from the Interwebs.

In this case, I was definitely not writing about health IT, nor the latest Health 2.0 trendlet, but the basic, nearly-universal-among-internet-users habit of Googling for health information. Search is becoming a wallpaper technology, something we don’t even see anymore, yet it’s clearly an activity worth discussion.

However, Darthmed is telling the hard truth about health issues facing the U.S. It’s his voice I heard in my head as I listened to speakers at a recent National Institutes of Health workshop, “Preventing Stroke and Heart Disease: Connecting Traditional and Emerging Approaches to Change Behavior.” Speaker after speaker talked about how nothing really works in trying to get people to change their diets for the better, to get more exercise, to save their own lives and the lives of their children. It was a parade of one step forward, two steps back interventions: media campaigns, individual counseling, community outreach. None worked long-term.

As I sank lower and lower in my seat, the lizard brain voice started in: “What good is any of your data in the face of this crisis? People can’t sustain behavior change after being told directly that they are killing themselves. And now you’re going to get up there and talk about Flickr, YouTube, and blogs? What is the point?”

Luckily, the NIH workshop happened to fall on the same day as the FDA’s hearings on the internet and social media. My Twitterfeed was alive with coverage of the hearing, including some passionate opinions about how the internet can transform health care.

Another piece of luck is that for every Darth, there is an Obi-Wan Kenobi. For me, that’s Esther Dyson. She gives me the confidence to say nope, I don’t have a crystal ball, but I can help people understand the present in order “to get a sense for how the future will pan out.” I believe that, although very few people engage with their health on a daily or even weekly basis, it is important to understand what they do when their attention is focused on a health question.

I also believe that we don’t yet know enough about how to capture people’s attention, how to inspire them to say, “You know what? I’m going to skip that fast-food meal and make something healthy for dinner.” Maybe it could be something on Flickr, YouTube, or a blog. Maybe it’s something they find in a search result. Maybe it’s being connected, being part of a network of people who are influencing each other without being conscious of it.

Earlier today, I was reading about research that revealed that people have a happiness “set point”, i.e., a base level of happiness to which they typically return, after episodes of increased or decreased happiness. This set point is 50% genetic, 10% circumstantial and 40% based on intentional activities … but even the effects of those activities tend to “wear off” after several months, returning [most of] us again to the base level of happiness.

I wonder if a similar factor is involved in health, i.e., that we have a health “set point”, that we unconsciously seek to maintain, and if/when we do something healtyy, we’re destined to counteract that by doing something unhealthy.

I recently wrote an article about e-patient connections-one of my favorite topics!- and as soon as it posted, I received an e-mail from a PR person who had read it (even though she had no clients in it!) and she wanted me to know that it touched her on a very personal level as someone who is going through a “medical journey.” This tells me that although we may not see the uptake we would like, it does matter very much to some people. “It matters to this one,” the boy said, as he threw the starfish back in the sea. Right?

I as scroll through the comments and reflect back on Darth’s original skepticism I feel like part of the story is missing—Health 2.0 extends beyond data, diagnosis and treatment. An online experience can offer psycho social health related benefits as well. Just ask e-Patient Dave or visit the CaringBridge.org Facebook fan page ( http://www.facebook.com/CaringBridge) to hear how services such as this have the ability to positively impact patient’s lives and ultimately, health. For these patients and their caregivers social support can be a lifeline. Dr. Charles Raison, an assistant professor of psychiatry and behavioral sciences at Emory University School of Medicine and CNNhealth.com’s mental health expert quotes:

“The jury is still out a little bit on whether social support helps you survive — but it definitely helps you live better.” He noted that while some studies show a survival benefit and others don’t, almost all show an improvement in quality of life. “When people provide each other with support and encouragement — that can make the difference in a person’s life between … surrendering to hopelessness and … finding the gumption to keep going.” (http://www.cnn.com/2009/HEALTH/06/15/social.support.benefit/index.html)

Much as I spend time on the internet, real human interaction beats “social technology” every time.

Why spend $10M setting up a online support group for 1,000 active patients around the country, when with that money we could fund 10,000 regional support groups (touching, say, 100,000 patients) where people could actually chat with each other, share drinks and actually exist in the same space.

Prof Raison is talking about real social support, translating that into keystrokes on a computer is selling the possibilities short. Or maybe, we should simply invest in better chat bots…

Completely agreed about the idea of spending $10k per patient on a big platform. I don’t know how familiar you are with ACOR (a pile of plain text listservs) but a year ago at Christmas they tried to raise $100k (much needed) and only pulled in $20k. And I think they serve tens of thousands – I don’t know how many.

Interesting (IMO) is that ACOR’s listowners adamantly stick to plain text because so many of their members don’t have broadband. My kidney cancer group there has a member from Pakistan whose mother has the disease; ACOR’s letting them bring their info to the local oncologist.

Sometimes in my talks I say “Whatever we spend, let’s set aside 1% for the patients. We’ll get a lot of adoption for a tiny spend.” When I say that I’m thinking about ACOR.

I’ve got nothing against great and powerful websites, but when it comes to community, it’s the people, not the platform.

And as Pew’s data shows over and over, when you count handhelds as an online device, the ethnic differences in online presence disappear. I’m no policy wonk but it’s pretty clear to me that if we want to reach humanity, we should go where they are. This was #5 in our white paper’s Seven Preliminary Conclusions: Whenever possible, healthcare should take place on the patient’s turf.

I second Dave and Meredith. The Cushings-Help support boards and websites serve people all over the world. I am closer to some of the folks overseas (and places in North America) than some of my family. And getting out to physically meet in a group is nigh unto impossible sometimes. Not to mention if I need to reach out to someone immediately, there is always someone up and ready to help. Usually, between our support boards, facebook, and twitter groups, there are quite a few there for me. And I am for them.

The resources and comraderie that having something online where anyone can reach out is only possible in the “internet age”. There is no way this amount and quality of data and research, much less caring and support, could be emulated in “real life”. But this IS very “real life” to us.

I am going to ask MaryO (Mary O’Connor), founder/owner of Cushing’s Help to come comment on the running and cost of the services she provides. We do sporadically donate at our own discretion, and she never asks for it, so I don’t know the true cost. I do know she pays most of it.

As Dave said, it doesn’t take a $10K/person. It did/does take a lot of time and commitment on MaryO’s part. And I imagine in Gilles’ part, too, with ACOR. Probably others.

Dear Darth,
Some patients are physically or psychologically unwilling or unable to gather in real life (IRL). Them them/us, virtual community is not only a viable alternative, in some cases it’s essential and life-saving.

But Meredith – thats why we have tools like skype/IM, twitter, email, second life, facebook – so people can have social experiences even if they are unable to socialize “IRL”. I dont object to folks taking advantage of those tools at all.

What bothers me about “Health 2.0″ is that it is demanding additional resources and energies that I dont believe are providing much benefit above the generic non-health stuff thats already out there. Resources that could be better applied to address real, preventable health challenges.

I dont have much medical experence, but what little I do have sugests that the energy required to get well in this day and age is needed. And yes, it could be used in other ways. But when you have doctors that run a business instead of a service and operate in a holier-than-thou attitude, it REQUIRES the paitent to be their own doctor. And I’m not talking about just getting involved, but actually having to force the doctors to run tests aginst their own will just to get a diagnosis! If it were not for comunities such as Cushing’s Help, I would probably follow the same fate of my mother, who died at 54 years of age. She just followed what the doctor told her to. It is ridiculas that we have to learn the equivelent of a degree in medical science just to get well! If it were not for the online comunities, specifically Cushings Help, I would not know what to look for and what it means when my symptoms flair up, and I would not know that my current doctor is full of it. The average person on that board knows more about my dissorder than he does, and he writes journals entries about it.
This disease messes with you mentally so much, that talking to anyone outside of this computer screen is nearly impossable both physically and mentally. I couldnt sit and say all this in person. Plus, the anaemity helps many people become more confident in sharing their experences, knowledge, and conserns.
To say that communities such as Cushing’s Help is no more helpful that People Magazine’s “5 ways to a slimmer you” is a ludicrous and ill informed statement.

Voice of Reality? My reality is that thousands of people have Cushing’s, a disease that most doctors won’t recognize, test for or treat. If doctors don’t believe in Cushing’s, they’re certainly not going to tell patients about others who might have it.

A doctor’s office would be the perfect place to get patients hooked up with others for support. But it usually doesn’t happen. I have talked to many others who went to the same doctors as I have. I only found out by chance when they called me about something else. No doctor has ever suggested calling another patient.

I also happen to have kidney cancer. My doctor, of course, didn’t tell me about others in the area. In fact, there might not be any. I turned to my local cancer center. They have lots of support for all kinds of cancer but not mine. I asked about this and they suggested I start something. So, I set up a meeting time and no one came. There must be other survivors out there (like e-Patient Dave!) but I’m not finding them IRL, but online. That’s the only place I can learn about new treatments and get ny kind of support.

So how, if not IRL life do we meet other patients? “…skype/IM, twitter, email, second life, facebook”…If you didn’t find others with your condition on a website, how in the world would you know who to call or email?

That’s why, in addition to the message boards and features of the cushings-help websites, we branch out into the greater Internet with a presence most everywhere. Who knows? Maybe a friend of a friend will see something about Cushing’s on Facebook and ask about it. Perhaps another person will find a diagnosis easier and faster.

Cushing’s is a very real and very NOT-preventable health challenge. There aren’t enough of us patients in any specific place to warrant local meetings other than a very-occasional lunch. Online is how we discuss when and how to set up a face to face meeting and usually those are only 3 people at most. Online is where we can get together to talk, to IM, to find out people’s Skype numbers and so on.

I’m not sure where funding info comes from. Being a “rare disease” we have only about seven thousand members. I know that many “Cushies” are out of work, have little or no insurance, pay a lot for testing, even more for surgery so I don’t charge anyone anything. I do accept donations if anyone cares to send them in. I do all the work for the websites (yes, plural) and the cost can be kept to under a thousand dollars a year, if careful.

Where did the 95% figure come from? I know that, on autopsy, 25% or more of all people have a pituitary tumor ( http://cancer.stanford.edu/endocrine/pituitary/ ). How about getting the word out to THESE people, while they’re still alive?

Mary, first I’d like to congratulate you on a great resource you provide – doing a lot of good for so many with, I assume, very little assistance.

But I ask you – with $20 billion being committed to ‘electronic health’ roll-out programs, $5-$10M being dished out by VC every week on Health 2.0 ideas that are destined not to be profitable, undisclosed sums burnt every month by Microsoft and Google on health platforms that arent sizzling… wouldnt we do more good if funds like those were spent on grants for services like yours, as well as increasing the availability of services / treatment / care?

I think Health 2.0 gets most of its credit on the back of efforts like yours, which – if I were in your place seeing the $$$s flying about – would make me upset.

Her sites ARE Health 2.0. The google and microsoft developments either will or wont work. The choice is really with the masses and how they use it. If no one used twitter, it would not be here today. Half of my job now requires me to study these very trends in social media. While grants for services like Mary’s would help, we do not know what is on the horizon. And it seems that you keep going back on yourself by saying that you need to meet IRL, that the message boards offer “no real help” but then suggest that money be derived that way. IMHO, the more tools we have, the better doctors we can become.And patients are increasingly having to become doctors, from a certain point of view. (Star Wars fans should appreciate that last bit!)

When government funds are spent (grant or otherwise), there are hoops to jump through and so much bureaucracy that the good gets lost in that mess. I am of the firm belief that the only way these grants would work is if they were given with NO STRINGS ATTACHED. And you and I both know that won’t happen. We will get back to someone telling us they know best. We know better.

Thomas, I completely agree. I didnt want to delve into that since this was more of a patience advocacy topic. I myself cant afford health insurance but I have the pleasure of having to pay out of pocket any tests I have done for Cushing’s. Its rough out here. We can either go broke or die.

Here is how this post (and former post which led to this one) and the comments have sorted in my mind:

The system we call healthcare needs to improve.

In the short term, patients need quick access to their medical records, testing/imaging, and lab results.In order to get “quick access”, even in the short term, something/someone will have to be added to what is already there. There aren’t enough people to handle a demand for that by even a small percentage of patients. (Why else the 30/60 day rule with HIPAA? Oh…well, maybe so they can sift through information to make sure only what they want patient to see is given to patient.)

Just like with my ATM analogy, to save money HC will have to automate this process. Customers/patients will “self-serve”.

When a few customers “self-serve”, the numbers of others will increase quickly, perhaps even exponentially for a while.

In order for patients to self-serve, HC is going to have to be transparent. No longer can they sift through what patients get to see.

Sure, it takes a moderate to highly activated patient to “pull” health information therapy into their browser or iPad screen without being prompted to do so by a clinician. There’s as app for that and there is a population segment that will pull (a lot higher that 5%, I might add).

There is also an app for clinician intermediated Ix prescription of health information. Clinician initiated “push” messaging has the power to get the consumer to inspired to take action under the guidance of a care plan. This method is crucial to reach the less activated population.

It is inevitable that we are going to invest $Sagans (i.e. billion$, and billion$) on HIT. It is up to us to call for patient engagement features in these tools. It does more harm than good to dump a bunch of clinical data in a patient’s lap without consumer oriented information therapy that helps them understand the data and make better health decisions and change behavior.

This is where contextual search comes in handy. Smarter search tools that suggest Ix prescriptions to clinicians based on diagnostics, orders, meds makes it easy for clinicians to adopt the practice “push” Ix. Smarter search also facilitates system “push” to that, just in case the clinician didn’t provide it, a patient can get relevant documents to help them understand their lab results and make better decisions e.g. “Dang, my cholesterol is really high, maybe I should have cheerios for breakfast instead of biscuits and gravy”.

What does this have to do with Health 2.0? It’s just a communications platform, man. Don’t hate on it. We can still use the printing presses along with the iPads. But to not integrate our communication modes with whatever the people are using would be a massive missed opportunity.

Thanks, David – “our bodies, ourselves” is indeed a rallying cry for the ages, not just women in the 1970s. And I’m definitely going to work “the juice ain’t worth the squeezin'” into my talking points (somehow).

I’m getting set to update the “Navigating Health Care” chapter of none other than “Our Bodies, Ourselves.” I’m hoping to bring emerging Participatory Medicine concepts into the chapter. Anyone involved in this discussion who is willing to provide input on revisions from the 2005 version of this chapter please contact me. midwifeamy [at] gmail.

It was great meeting you at BIBA. I read your blog post and recognize questions that health campaigns and interventions have tackled since the dawn of public health.

Behavioural change theories explain the challenges people face when they choose to change their behavior. Models also exist to predict a person’s likelihood to change behavior. And they all have a central theme: knowledge does not equal behavior. For an intervention or campaign to be successful it must address layers of attitudes, beliefs, motivational and environmental factors.

Whether it’s dropping a bad behavior or picking up a new one, most people cognitively understand why they have to change their behavior. The tricky part is the how. Many people attempt to change behavior and are discouraged when they run into barriers. Worse even, they may only have control over some of those barriers.

Take for example the chronic patient who opts for the fast-food meal. Let’s brainstorm the factors that influenced his choice. He knows he shouldn’t, but does he have viable options? Are there tasty, convenient, satisfying and affordable salad places in his neighborhood? Does he believe that a salad will make a difference after so many years of fast-food? Does he believe he has the power to make a difference in his health conditions? Or does he believe that medications alone will help his health? Are his health issues overwhelming him to a point he’s given up? Questions like these address a sliver of the factors that influence choices that may hinder behavior change.

Is making accessible and reliable health information available worth it? Definitely. For the self-starters out there, Health 2.0 is a valuable tool towards a healthy lifestyle. For the rest, we can hope that simple and broadly available health information will support and promote a cultural shift.

So once again, thank you for your contribution to the field. Health campaigns need Health 2.0!

Darthmed brings up a good point — the solutions required to better public health are not fancy IT apps but low-tech and sometimes “unsexy” approaches. Behavior change isn’t born out of labs at Google, but through health communication approaches that are based on theory and practice. People are rarely self-motivated to become informed and change their behavior unless they are brought to a point to do so (i.e., internalize risk, increase fear).

With that said, though, Darthmed’s comment is very narrow in that it assumes “fancy IT” is a means to an end. It’s not. Health IT, Health 2.0, and the data behind them, are merely tools that can be leveraged to enhance campaigns that aim to change behavior.

Never before have public health practitioners been able to reach audiences at such a targeted level or been able to interact with individuals and mobilize them at the grassroots. Yes, some “low-tech, unsexy approaches” still work, but are we going to ignore the emerging tools and data that help us reach people with those approaches?

I’m a strong believer in constructive criticism — it’s a good thing :) — but in this case I believe it’s born out of a lack of understanding and unwillingness to think beyond the “unsexy” box

Susannah, your research and reports are invaluable and have been extremely helpful in my work :) Keep it up!

I think it is also worth considering what factors are within our domain to effect through the provision of healthcare and supporting educational materials, and which ones are not addressable via that framework. Much of the long term healthcare problems that individuals face are the result of societal forces. Eating well is hard when every adult in the house works full time with a substantial commute. Regular exercise is less feasible around a demanding schedule as well.

Then there are the political / economic causes such as agricultural subsidies that make high fructose corn syrup an ingredient of choice or a increasing disparate income distribution that tracks closely with health. And when it comes to information technology and patient directed health research, the allowance of direct-to-patient advertising in health care poses huge risks – probably why everybody else except New Zealand doesn’t allow it.

Not that health 2.0 can’t achieve valuable things, but I personally am skeptical of seeing any big shifts. I am also concerned that an increase in perceieved patient responsibility for healthcare management can easily transition into a blame-the-patient for their condition, and blind people to the structural factors that are leading to this state.

Leave a Reply

Welcome

Participatory Medicine is a model of cooperative health care that seeks to achieve active involvement by patients, professionals, caregivers, and others across the continuum of care on all issues related to an individual's health. Participatory medicine is an ethical approach to care that also holds promise to improve outcomes, reduce medical errors, increase patient satisfaction and improve the cost of care.